I'm getting very disappointed with this site. I just feel many people on here just winge about their problems and many are so negative. I joined in the hope that I would be encouraged by others suffering from PBC. But it just seems like a doom and gloom chat site.
Think it's time to go methinks !!!!!!!!
Hi Hidden
So sorry you feel the site is negative and sorry you feel the need to leave.
For myself I have found it a useful source of information and full of people who are frustrated with a disease when in the past they have been so healthy. People who are new to PBC are usually lost in confusion so those of us who have been diagnosed a while are able to help with our own experiences. Certainly nothing much is going to change for us as there is no cure in the pipeline however when useful titbits are shared such as the vitamins which benefit us or knowledge of our blood results which I find helpful. After suffering for ages with my eyes I came across an eye bag and this information I shared with the group. If you are not on here where else will you find information pertinent to yourself and where else can lost souls go to find people who understand them.
Sending you best wishes for the future and sorry to say goodbye.
Thanks butterflyEI I except your comments but to be truthful I don't get dry eyes or itching or any of the other systems. I don't honestly see how other people's blood results have any reflection on my symtoms. I don't keep personal records of blood tests etc as I don't see any purpose to them. Readings go up and down all the time and I think a lot on here panic too much. I also feel that this disease has become very one sided as regards gender. I know it's mostly women who get it but some one needs to shout out for the guys. We are being sidelined in my opinion. I've read many articles on this matter and nearly all are very female related.
Simply because as you say this mostly affects women. Like you I don't have a lot of symptoms, but still find the site useful if I want to ask about something, also reassuring to know other people are in the same situation as you. Depends what you're looking for I suppose. Think my hubby would feel the same as you.
I have commented directly to the Canadian PBC Society that, even though the incidence of this disease is much higher in women, they need to direct more of their info to men, and families too. My husband is the one with PBC and I see the lack of remarks about the effects on men. Nonetheless, the info here on this site, and others, has still been helpful. I have come to realize that everyone has slightly different reactions to the disease and to the limited drugs/treatments available. I look at any suggestions as possible aids, and anyone who is describing symptoms or voicing concerns as someone reaching out who can use moral support and ideas to cope. Heaven knows that I have asked for ideas to help my husband understand and cope, and have been grateful for any replies! Wishing you all the best, essexmike. (Not sure if you are from the town near us of Essex, Ontario, Canada or some other Essex....?)
hi mike im a pbcer of 18 yrs unable to work all that time so the pbc has a huge impact on my life. im going for my part 1,asessment for transplant next month as it has now reached a point where my liver is struggling to sustain me.
i think if i wss symptomless as you say you are i would probably not be on the site as it is mostly people with a new diagnosis or more severe symptoms... this could be a bit depressing if you are feeling fine.
a lot of us take great comfort from others in a similar situation and the blood tests are discussed as sometimes people are unsure what they mean and the old timers or transplantees can put our minds at rest.
probably you need an info site rather than this one. im sorry to hear that you have not found it useful but I think it may be that you are at a different stage to a lot on here.
hopefully assuming that you are on urso your pbc will be stable and may never get any worse.
you are right about the blood tests a lot go up and down like a yoyo and that doesn't mean that much its only really a few that are more drastic if they change.
so if you possibly can put pbc to the back of your mind and enjoy life to the full take care of yourself ... eat well and stay away from too much stress if you possibly can. my very best wishes to you and hope you find a site that meets your needs better. good luck cazer.
Hi butterflyie. I am interested in your comments re an eye bag. I have Pbc stage 4 with cirrhosis and have sjogren syndrome too so have bother with dry eyes. Can you tell me more about An eye bag. Thanks
Hi 195748
I was diagnosed with dry eye by the optician and had been using Systane Ultra for quite some time. Then recently I found my eyes were troubling me really badly, the GP told me to use more of the eye drops but on an annual check up at the optician I mentioned my dry eyes and he suggested an eye bag. I have bought the MGD Rx eye bag. I have been using it for about two weeks now and rarely use the eye drops. For me it has been a miracle.
I hope it does the same for you.
amazon.co.uk/MGDRx-Eye-Bag-...
Thanks butterflyEi. I just ordered it so hopefully it will help me too. Thanks for that 😊
Sorry to see thatyou are thinking about leaving. However i do agree with you to a certain point. It van make.you worry more reading all the posts. Im 6 wks post transplant now and set up a.page for information on Facebook called " liver transplant recipient, give life live life " if you want something more positive. Best od luck with your heatith xx
I agree with you Mike, depresses me now to read all the negatives,
Thanks for your comments, Mike.
At the Foundation, we provide many services and this is just one of them.
Our service users have many needs after diagnosis (and sometimes before), which are wide and varied. Some people's needs will change as they go through their PBC journey. People will read the Bear Facts and take different pieces away. People will attend our self-management sessions and take away different models, tools and techniques. People will call our helpline and ask individual questions and have the opportunity to have them addressed specifically.
There are many facts presented here, but there is considerably more opinion. As ever, some opinion will speak more to you than others.
If you decide to take a break from here, the site will still be here and you would be welcome back at any point. Many members of the Foundation drop in and out of here. Many more dont use this facility. The key is you make the right decision for you.
I read your comment re blood tests. We encourage our service users to monitor their bloods. What the blood tests do over years gives each patient (and their clinician) a good idea of risk of disease progression.
As an aside, I notice you said that someone needs to shout out to for the guys. Could you be that someone? It has been said that darkness can not light darkness: only light can do that. Just as negativity cannot help negativity, only positivity can do that.
We each have the choice to be positive or negative. We have the choice to speak for others or not. Whatever you decide, we bid you well and we look forward to being of service to you.
Yours,
Robert.
I am disappointed that you are leaving this site as we need more people like you who have PBC but lead a normal life. People seem to be diagnosed so much earlier now and are very frightened for the future. To hear that you can lead a normal life with a few adjustments like you do, would be so positive and reassuring for them.
However I respect your decision and wish you continued good health.
Hi Mike,
This site has been both useful and rewarding in ways I didn't expect. But there's the thing; I didn't join expecting anything. Look with an open mind. Some posts are clearly from people with knowledge and some very clearly have none, some are clearly scared, some struggling day to day. You can see everything on this site if you hang around long enough and maybe over time you can begin to recognize the names of those you have more in common with, that you can relate to.
Some posts may sound negative or whingey but that person may have been having 'a moment in time', a short period when posting feelings can be like a relief valve, letting go of a little pressure. And if that person gets a few friendly or even knowledgeable replies, that IS supportive, it IS encouraging. One of this site's strengths seems to be that it's a large network where almost all of us step in from time to time to help each other if we can. Some write loads all the time, others have phases and maybe don't post for months or even years, even though they may be reading the posts every day.
Blood tests. Personally, despite that fact that I have no symptoms and am technically preclinical, getting the blood test results is very important to me. I want to understand what is being tested, exactly what the results mean, what the hell my consultant is saying to me, what my GP has missed and where the gaps in her knowledge are, what it all means in the context of the NHS and the latest research and also to give me enough knowledge to ask questions. If you were in a position where you had to buy a jet plane, would you do it without knowledge, without asking questions, without knowing a little about how a jet plane works? For me getting the blood test results and trying to understand them is vital - it helps keep me calm - a little bit of control in this madness, but to others on this site, it's not. Does that matter? No, we are all very different, different lives and different pressures.
Maybe if you're feeling down - about everything including this site - just take time out but don't necessarily leave. You might feel differently another day. Also if you are feeling down for long please go and speak to your doctor, they may well be able to help. Whatever stage of PBC someone is at, it seems to be incredibly stressful for everyone and we all seem to be negative and depressed at some point - but hopefully not all of us at the same time!
Try turning your thoughts completely around, Mike. Ask not what this site can do for you, ask what you can do for this site! Take Robert's advice and be an advocate for the male sufferers, become the joker and cheer us all up with regular stories and jests. Might make you feel better, too!
Do have to agree with you. I was diagnosed with PBC at 29, I was told your more likely to die with it than from it. At 39 I became seriously ill and had a liver transplant, now 43 and doing great.
The illness is horrible and can have a massive impact on you and your family. I worked for as long as I was allowed to but I developed encephalopathy so my driving license was revoked. (Awkward as a driving instructor!!), despite not being able to work or having an income I remained optimistic, you have to.
So I agree, it's horrible, vile in fact but to me there is always someone worse. I'm grateful to have gone through it, I'm out the other side, I found out how fabulous complete strangers can be and how much love and support there is.
Keep smiling, I do 
Thank you Kiddie
I do try to keep smiling
Mike 😊
Hiya. I do avoid from time to time but in general I like the comfort of knowing the site is here and people who have one thing in common with me are available to help and advise. It is one resource that's all. Don't leave. Come and go as you like and keep the positivity going x
May I ask what happened during those 10 years to so drastically increase your disease that warranted a transplant?
Unsure, its a progressive disease and in my case it progressed faster than my consultant anticipated. Unusually I didn't respond to Urso. I carried on my every day life without much thought to the condition, by the beginning of 2012 I became only to aware of it!
I guess I was unlucky in that respect but also extremely lucky to have an excellent care team.
Hiya I was thinking the same but we have to winge about it sometimes because for some people this is all we have, anyway I'm doing really good with me pbc I wasn't in the beginning I thought I was handed a death sentence I've changed my hospital I'm now with the best doctor ever my medication now 1000mg twice daily yes I have some scarring so what when I'm tired I sleep I have more good days there bad. My bloods are the best that they can be. So happy days and what gets thrown at me il deal with it. I hope your good. We do have some good story's on here and to me mine is amazing
I think your comments are a bit harsh to be fair, some people cope better than others and when people get to a point when they are upset, confused and feeling like a complete wreck they turn to this site to vent it out because they are scared and they don't want to keep doing it to their families as most families don't realise exactly what they are going through so they come on here instead to find assurance from other people who are going through the same thing, we are on this site to help each other as one day you may feel crap and want to vent out!
Hi
I understand what you say and yes if it helps some fair enough but I don't think this site is helping me sorry buts that's my take on it
All the best
Mike
Hi Mike, like you I am lucky enough not to suffer too badly from PBC. Have had it for over 10 years now but do not feel any worse now than I did before although tire more easily. Yesterday was an import and day so was out campaigning against Trump's inauguration on the streets of Southampton both at lunchtime and again in the evening. Today I will be out campaigning to "Save Our NHS" an issue we should all be concerned about. No doubt I will be feeling a bit tired this afternoon! However, the more I do the better I feel. I agree that many people seem to whinge a lot on here but I cannot judge how unwell they feel. I tend to pick and choose the posts I read and am thankful that I am still ok.
Thanks for replying and I agree. I get out and about and live a normal life. I think what I meant is I'm not going to let it beat me. Some seem to just lay down and not try. Life is for living and that's what I intend to do
Good luck with your campaigning
Mike 😊
I so agree Mike, I have been living with PBC for seven years now, I have no itch, I take my medication and I also have Scleroderma and Fibromyalgia but I refuse to let these illnesses rule my life, I still enjoy holidays, work full time every day, and I intend to enjoy my life to the full, I refuse to roll over and get depressed and give up on so much, life is for living, not regrets.
You have had some good positive replies, and I do truly wish you well and hope you find what it is your looking for in the line of support but I actually think your being rather rude.
Some may think iam being rather harsh in saying that but you joined hoping to be encouraged by others, but your not prepared to stay and encourage those very people your expecting to help you.
I see two of your posts three months ago were about your depression, perhaps you need to consider that your fault finding about this site may be due to your depression and your own negativity and not the sometimes negative frightened people you seem to be targeting for your reason to leave this site. I think you need to ask yourself this question... Why not just leave the site people do all the time.. why publicise it, what did you want to gain from letting everyone know your leaving the site... think about it....
I for one female or not would help anyone get through any negativity due to this chronic condition because I believe we have all been scared , depressed and or frightened of the diagnosis at some point, or may feel that way in the future ,let's face facts it's progressive and may get worse so I believe a little empathy goes a long way. Helping others helps take the focus of oneself.
Hi
I will admit I was very scared on hearing I had PBC but I'm learning to cope now and I honestly didn't intend to upset others with my comments.
I don't even think about it now days it's just at the back of my mind. The reason I put my feelings out there was to see if others felt the same as me and many have said they do !!
I understand many are at a worse stage then me and suffering pain and discomfort and I do feel sorry for them, but I want to stay positive and negative posts aren't helping me
All I can say is I apologise if I've upset anyone it was not my intention
Mike
Shame your leaving but Good luck for the future mike, I hope your pbc journey is a smooth one.
Hi essexmike,
It's good to talk and winge as you know I'm glad you have learned to cope with your illnesses and not just the Pbc but it's side effects as I call them depression etc, I like a winge at times it helps me feel better and I'm hopefully not bringing anyone down with me but it is one of my coping mechanisms sometimes and other times I feel I can say something positive to another person.
Just to add I'm happy you feel more confident in yourself and your replies and wish you well.
Hi Mike,
I think you and I are similar. I was diagnosed 16 mos ago. I had no idea i was sick. I actually thought I was pretty damn healthy. I am a 44 yr old female in the US. I coach 2 sports and stay very active. I was simultaneously diagnosed with Celiac Disease and a month after the 2 initial diagnoses, they discovered 18 hepatic ademomas ( non-cancerous tumors that can turn into cancer and/or rupture) in my liver while doing the MRI to stage my PBC. I had a biopsy and the doctor came in and told me it was cancer. --fortunately he was wrong. Final path. 1 month and another biopsy later, I know my tumors are not cancerous. Talk about a wild ride. When all this was happening I had a million questions mostly about how long I could live and be functional. I worried about being itchy, tired, unable to work, afford the Urso. All the things all of the people on here worry about. I, like you wanted to find those people who were LIVING and optimistic and doing well. Unfortunately I was not finding them. I think we dump our fears on the internet because we don't want to burden those we love. So we leave the negative to strangers. I try to stay away from the PBC and the internet except to read current research because it drags me into a bad place emotionally. BUT for all of you looking for someone who is diagnosed a feels great, here I am!
I do not itch (except my neck when I first started Urso- it went away) Since my diagnosis, I have done things I never could before (Celiac may have been kicking my ass ) I have run a half marathon, a couple of 10K's, I run regularly, play soccer a couple of times a week, I learned to rock climb. I work full time as a teacher. I coach 2 sports- soccer and cross country running, I have 2 teenage children and a husband who coaches as well. We are super busy. I get tired- It seems once every 4-5 weeks I just have a week where I want naps. Maybe that is how all people are! When I feel "off" or sick I can usually blame gluten. I have 5 years until I retire and when I was diagnosed, I was all panicked that I would retire just in time to need a transplant. I don't feel that way now. I control what I can control. I stay healthy, I have eliminated all processed foods, I eat organic when I can and avoid plastics. I use only natural products on my body ( Yeah, my doctor thinks I am a little nuts) I drink coffee (which she told me is great for your liver) My Alkaline Phos. has dropped to within 16 points of normal. My ALT is now normal and my AST is now normal. My tumors are a mixed bag. The biggest ones have gotten smaller, but many small ones are bigger. I am refocusing on eliminating more sources of estrogen (my tumors are believed to be "fed" by estrogen) so no soy or other phytoestrogens or xenoestrogens.
I intend to live to be at least 90 and plan on having my own liver, but if it all goes to hell, I intend to be healthy enough to be a great candidate for transplant. Time buys us advances in medicine and maybe more answers to autoimmune problems.
Hang in there all- It is possible to have PBC and some of us were lucky that a doc caught it early. I am grateful that my doctors were on top of it. I get you Mike- you can't make PBC your life until you are forced to. We have to live the best we can, while we can. Hell, I could get hit by a bus tomorrow and die before PBC ever gets me.
Everyone- Do all you can to make your liver's life easier. Honor where you are emotionally and physically and celebrate all the good things. oh, and if you have not been tested, consider a blood test for Celiac. They think there may be a relationship between PBC and Celiac. ( We all collect auto-mmunes- right?) I didn't have any classic Celiac symptoms, but if I were still eating gluten, my liver numbers would still be high and I would still be tired, having headaches, stomach discomfort, tingling in my legs, and brain fog.
GOOD HEALTH and POSITIVE VIBES. Mike---You got this!
Thank you
Hi I'm sorry you feel this, however we all have a choice whether or not read the posts. I have found the this site extremely beneficial. I was diagnosed with PBC 2 months algo. My life was turned upside down, I had no one to ask questions to, as is normal no one I knew had heard of this disease. I was in a very dark place, people have been positive and honest in their replies to me. Had I been diagnosed with cancer the info out there is limitless everyone would understand more what I was going thru. The members area has given me so much info, mainly this disease affects 'people' yes I agree more womenthan men but gender to me doesn't matter it's info and experiences that I get from them. I can give and receive and share. Forums are useful if you use them in a positive way, if you don't find thissite doesn't work for you then just stop visiting it. if it's not beneficial for you then it's not useful but what I'm trying to say is it for some
i wish you good luck and good health.
Totally agree with you, it's depressing, but then I suppose we're the lucky ones, with no real symptoms.
The PBC Foundation is always the best source of support.
Personally, I have found a wealth of information here. Also, just to learn that you can live a long time with this disease was helpful. I was diagnosed mid-December and cried everyday for a month until I found this website. I feel I can sit back and breathe a little because I now read what other people are going through, good or bad. The one thing that helps is to talk about it, whether it's positive or not. Outside of reminding me about priorities and making sure I appreciate my life, this disease is not positive for me and there are times when I just want to scream. I look forward to reading the posts to calm me down.
Essexmike,
know what you mean. It helps me to read some of these posts, then I gotta take a break especially when there's doom n gloom. Still it was here that I learned about 2 new promising treatments, reading what it's like having a transplant plus affirming what I do to cope with having pbc so well is the best. Leave if you must but I don't want you to, I might learn something from your posts.
Jlruggie
Hi jlruggie
I'm having second thoughts of leaving as so many have been supportive since I posted so I'd be happy to help if I can in my small way
Thank you for your kind reply
Mike 😊
Dear essexmike,
I know no one with PBC, I have no one who understands anything about my illness. On the surface I look OK. I work full time, I take care of my children, I go on holidays. No one understands how different things are for me on the inside. How pain, itching, sleeping problems, eating problems, low iron, joint pains, stomach pain, stiffness and a recurrent feeling of me dying inside make my life so much harder. There is no way for me to explain because to everyone I look OK!
So yes. Maybe I winge and complain and focus on my symptoms on this site but that is a life saver for me. To see that others are struggling - sometimes winning sometimes loosing - the same way I am. That the symptoms I have are not all in my head, that my periods of extreme tiredness and need for rest rest rest rest are indeed a consequence of something physical going on in my body.
I have an OK doctor but he doesn't understand what it feels like - and even if he did, there is very little he can do. He prescribes things for everything but - as we all know - not much works. I am getting medical care, but learning to live with PBC is something this site helps me with. I'm ever so grateful it exists. For me there is a point to everything people write here! I realize there is no way for people to understand that the slow progressive failure of a major organ in your body can affect you in so many different ways. But for us, who are all experiencing it, we get it - and that is such a comfort!
Of course you shouldn't stay on here if it brings you down, there's simply no point. But I have learnt a lot from you and that's been worth something to me.
Thank you!
J
Thank you jowen for replying and after seeing a lot of support for me after posting I have decided to stick around
Wish you all the best
Mike 😊
Thanks to everyone who have shown me a lot of care and compassion. Have to say I'm totally blown away with all the love out there.
You've made a grown man cry 😢 But it's more like tears of joy for all your support
I wish all of you well and hope I can support you along the long road we all face
Mike xx
Hi essexmike read your comment today 22 January and it made me chuckle.i agree what you said about doom and gloom. I am glad you have decided to stay. Maybe you tell us some funny stories or jokes and cheer everybody up. Thank you for making me smile today lcagar63
Thought this for a while if you have pbc it causes all the other problems in life I also have other ailments but not part of pbc
Nice to hear from another guy at last. We seem to be very thin on the ground
Yeah 1 in 10 I to don't have many symptoms and I've stay the same for the past 2 years next check up next month only go yearly now
I get checked every six months. Into my second full year since diagnosis
Hi Essexmike.
It's been interesting to read your post and the replies to it - many very thoughtful and encouraging. I'm the same age as you, at a similar stage with PBC, but have an X rather than a Y chromosome. When I was first diagnosed I did what many on this site did - I googled PBC and panicked when I saw the dire prognoses detailed online. It was only once I found this suite that I realised lots of people live and work with PBC for many years and that a good life is still possible, albeit with issues to be worked through and symptoms to be tolerated.
Knowing no-one with PBC means there is no-one I can ask about the day-to-day realities of living with early PBC and this site has provided a forum where I've learned from the experiences of others. I've shared my diagnosis with very few family and friends, and no work colleagues, so this forum provides me with valuable support in a remote and anonymous way.
To me, this forum meets different needs for different people at different stages of their PBC journeys. It's obviously a lot easier for those with few symptoms to 'get on with life' and be positive than it is for those seriously affected by it and I think we need to be tolerant of those who are in different places than where we are. Pick and choose the posts you read, have a break from reading altogether if that's better for you, but remember that the forum and it's members are there to provide support and advice whenever you do need it.
I was diagnosed with PBC in 1988 stage 1 and now in stage 4 and still doing ok with PBC it is my other medical conditions that cause pain and discomfort. I still try and enjoy life by volunteering and playing carpet bowls and trying to support PBCers with my Facebook PBC support groups and Website. I When I was first diagnosed with PBC back in 19988 I did not know what it was and never met or heard of another PBCer for 10 years, so for 10 years I was alone with this disease and was relieved when I met another PBCer in 1998. Wishing you all well.
Doreen
Melbourne Australia
That's unfortunate you feel that way. Do whatever you feel is best for you ...
Hi essexmike and others
This discussion has been so interesting, because it kind of represents both parts of me, and perhaps both parts of others too.
It's wonderful, and life-affirming, to get on with things and be 'normal' when we can, for as long as we can. But what happens if our health declines, or something else in our circumstances changes? Recently both happened to me, and I found myself feeling scared, and contemplating my own mortality like I did when first diagnosed.
However, good sense has prevailed, I've given myself a bit of a shake and normal service will be resumed - but how much easier this is when I've got all of you to talk to!
For some reason it doesn't help me to talk about it much to my husband, friends or family. Maybe it's because I need to be the person they expect - the person they can rely on, and that, in turn, helps me to see myself in a positive way.
I will probably come and go on the site, I will gain support and I also want to give it. Whether I'm coasting or struggling, I won't feel alone with PBC again, and I owe that to everyone who posts regularly, or who comes and goes. Everyone who's feeling good and everyone who isn't - you speak to both sides of me, and I'm grateful. x
Here is something very positive I have had stage one Pbc for 22 years. Liver enzymes were 600 when diagnosed down to 150 within three months if Urso. I have been sugar and gluten free the entire time Over last five years enzymes creeped to 200 due to weight gain. Just increased the meds to four a day Ftom three. Minor itching on back occasionally a scratch here and there. If I'm tired I push through it because napping makes it impossible to sleep at night. I am grateful my fibroid scan shows no nodules and my liver is in good shape There are aot of medicines to add if it ever gets worse but today I am happy that it doesn't interfere with my life. This site has been wonderful because I never knew that the aches and pains or fatigue were part of it. I just took my meds for twenty years and went for routine blood work.
Hi, Nice to hear you are staying. As a male PBC tends to advance faster on males then females . Having been told I had five years at tops was a bit of a shocker, but thirteen months later I was transplanted. It was during this time I learnt about my readings. I have access to my hospital readings and now being able to interpret my readings which tells me how I am doing. All illnesses come with their ups and downs and they affect folk in different ways, input from everyone on here helps us all in small ways. Thanks for staying with the site.
PCB....an I thought yer life began at 40....lol
Benefit of a gluten-free diet for liver health regardless of gluten intolerance?
Lack of support for PBC cirhossis....and venting feelings.
Fibroscan 12.2?
Can anyone tell me if bile is the same as stomach acid?
